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Hysterical, shame it wasn't it a restaurant!!! x

From thinking it was just a single Eee Ore, it just went on and on.  Embarrassing!!!  Oh yes!!!

I am posting on here as I think we have rather hijacked the sad post about Ulls' passing.

Just an update. I spoke to R's oncologist a couple of weeks ago and she has told us that there is nothing more they can do for him and now it is down to palliative care. We don't have a MacMillan nurse, but a palliative nurse which is equivalent here in Rutland. She came out to see us a couple of weeks ago and has rung twice.

As R has been having pain in his neck and now his shoulder, albeit intermittently, she was going to ask his doctor if he should prescribe something like Gabapentin which is more of a neurological type of pain killer.

However, our wonderful doctor rang me yesterday and thinks that that drug may have too many side effects, including confusion, and bearing in mind R's dementia, probably not a good idea. His psa has now doubled in the last 3 months and is at 78 and so agrees the cancer is now advancing. He has given us a bottle of Oramorph which he can take in a very small dose when the pain is bad, but, to be honest he does exaggerate pain at times, so I only want him to have it when it really is bad. The idea behind this is that if and when the pain gets worse, and presumably the doctor is thinking it may do, we can then just increase the dose.

When I asked the Oncologist for a prognosis, before this latest psa result, she did say something about it being difficult to say and mentioned, rather vaguely, many months. It will be four years almost since his first diagnosis of metastasised grade four, so I am not sure what the future holds and how long someone can realistically survive with a psa level climbing so high when he is now what they call mcrpc, (Metastatic Castration-Resistant Prostate Cancer). 

In a way, I wish we had some sort of prognosis, because we could then, at least, start getting things in order, but he is very much of an ostrich and I tend to just play things down as don't want him worrying. He often says things like, I will get better soon, or I will be walking better by the summer etc. and I just can't tell him he is never going to improve. 

Hi Gina,

My heart go out to you. You are so brave and hold it altogether. I know, we with the incurable PC will all reach this stage. I just hope you have many more months to come. 

With all my love

Dafna

Dear Gina, I’m so sorry to be reading your post.  My heart goes out to you.  It’s difficult anytime sorting out affairs as we have been recently and it’s a sore one . 

I wonder if your GP or specialist nurse could be involved explaining to R.  In a way that supports his dementia but not frightening him. 

sending you both huge scottish hugs 

Liz & OH xxx

Thanks Dafna, I think it is the not knowing that is the hardest but at the moment he seems okay and, to be honest, the cancer itself has not been too much of a problem to him symptom wise.

The effects of the hormone treatment however, have been the main course of his constant fatigue and physical weakness. He has been his worst enemy in a way and really not done anything to try and help with his illness, but I won't go into that now.

Thanks again for your comments. x

Hi Liz, I am not sure it would be wise to tell R anything as he will just give up even more. We have all tried to tell him to get up more and try and get some exercise, but unfortunately, since his retirement and illness, he has just become lazy.

He never used to be and we have always been a couple getting on with jobs in the house, decorating or gardening at weekends. He lost all his oomph when we closed the business and I think he just gave up and that hasn't helped. The words "use it or lose it" have been said to him so many times but he just doesn't listen. Now he has got to a state since his stroke and subsequent dementia, where he cannot do much and struggles just to go from his office to the kitchen.  He struggles to get out of his chair and we have to use a perching stool when he has lunch in the kitchen as I can't get him out of a dining room chair. It frustrates me more than anything when I think of my mother who died at 92, also had vascular dementia but had more upper body strength than R at 80. 

Anyway, I think I would rather he remained on ostrich for now!! thanks f your Scottish hug, from a half Scottish wife (mum was a Geordie and dad was born in Rothsay) x

Hello Gina (Sidsmum) 

I am so sorry to read your latest update. I appreciate you are doing all you can for R so please do look after yourself. I know hard times are ahead and things will get tough both mentally and physically so please do reach out here if you need to vent or just have a chat - we are all here for you.

I know sometimes you can get an overload of information but being prepared for any eventuality is good. I have plenty of links and information I can share with you but only when you are ready- please do message me if you need anything.

I have no doubt sent you this link before but you might want to join this group:

Carers only forum 

Remember our support line is there for you too on 0808 808 00 00 (8am to 8pm 7 days a week).

Kind Regards - Brian.

Gina, I know what you mean about 

Sidsmum said:

I am posting on here as I think we have rather hijacked the sad post about Ulls' passing.

Ulls would understand, you know what he was like!  There's a place for Ulls on the Naughty Step whenever he wants!

I keep forgetting that Ulls is no longer with us and keep expecting posts from him.  The funny jokes he would send.

Anyway, Sunderland did it, won the Play off final at Wembley.  Ulls probably had the best seat.

Sorry to hear that R isn't improving.  PSA now 78!  I had a bottle of Oramorph, think it is knocking around somewhere, think I only ever had it was in hospital, when I had my pulmonary Embolism in both lungs.  Feels like ages ago (2018), still not 100%, not even 50%... but...

Remember Richard is a man and we do (allegedly) exaggerate our symptoms.

It's almost 4 years for me, actually on next Tuesday, 27th.

I don't like the sound of MCRPC

Remember Rod Hull's Ostrich (well, yes it was an Emu... nearly though).

I'm thinking about you both!!

I am going to Ulls' funeral, we are leaving Clumber Park around 9.30 that'll give us a good run up.  Hopefully I will meet up with eddiel there.  Can't wait to meet Julie, Ulls' wife, it's just a pity it's in these circumstances.

Take Care 

Gina, remember when you started posting on Macmillan?  I had written about it in my diary.  Finally I have started writing it down onto my PC (a 'novel' of sorts).  It's bringing it all back to me.  I found Ulls' first post to me.  In it he says he stood up like a big boy for a pee for the first time in ages!

You mean the world to all of us in Macmillan land.

Brian Millibob said:

Millibob said:

I am so sorry to read your latest update. I appreciate you are doing all you can for R so please do look after yourself. I know hard times are ahead and things will get tough both mentally and physically so please do reach out here if you need to vent or just have a chat - we are all here for you

This is so true Gina!  Be Strong!